Making a Final Request: Dying at Home Doesn’t Just Happen

When informed that her death was imminent, Jacqueline Kennedy Onassis told her family that she wanted to go home.

She checked out of New York Hospital and returned to her 5th Avenue apartment where she died one day later “surrounded by her friends and her family and her books and the people and the things that she loved,” said her son, John F. Kennedy Jr., shortly after her death in May 1994.

“She did it in her own way and in her own terms,” he said.

Dying at home, in the place dearest to most people’s hearts, is one of the most common preferences voiced by Americans when asked about death and dying.

But this final request often goes unfulfilled. According to a 1996 Gallup Poll sponsored by the National Hospice Foundation, nine out of 10 Americans stated they preferred to be cared for at home if they were terminally ill. But an estimated 75% to 80% of U.S. deaths take place outside the home--usually in hospitals or nursing homes.

“We have a very high number of people who do die in the hospital or nursing home because they don’t know how to set it up to die at home,” says Mary Meyer, vice president of special projects for the Partnership for Caring, a nonprofit group devoted to improving care for the dying.

“A lot of people do want to die at home but they don’t know what that means,” she says.

According to experts, dying at home means that a terminally ill person and family members have created a plan and have made detailed preparations to carry out the plan.

A successful plan usually begins with individuals who make it clear to their family and physician that they want to die at home if possible, says Karen Davie, president of the National Hospice Foundation. It’s best if this conversation takes place before the person is even ill--such as at retirement or during estate planning.

But few Americans discuss plans for their own death, Davie says, noting a 1999 survey of 1,200 baby boomers that showed widespread avoidance of the topic.

“What we consistently found is that people really do not communicate their end-of-life wishes,” she says. “People were unwilling to have that conversation. They were more willing to talk about sex and drugs with their teenagers then end-of-life care with an aging parent.”

Without discussing death in advance (and putting those wishes in writing in the form of a living will and a durable power-of-attorney document), a sudden change in one’s health can trigger a chain of events that is beyond anyone’s control, Davie says.

“Too often the crisis precipitates the planning and then the clock is ticking,” she says.

But even if the wish to die at home has been communicated in a timely manner and stated in legal documents, many things can circumvent a peaceful home death, experts say.

One of the most common problems is that family members don’t understand what will be expected of them, says Meyer.

“Families need to assess: What kind of attention will this person need? How dependent are they? Do they need someone there around the clock, such as a visiting nurse program? Who will look out for the needs of their household? It is very rewarding, but there are enormous demands.”

Families need to formulate two teams, says Davie: A care-giving team that attends to the dying person and a support network that can help the care-giving team.

Hospice services can help families with these arrangements, she says. Hospice services are covered under Medicare if a doctor diagnoses that the individual will likely die within six months or less.

Since a hospitalization often occurs during the later stages of terminal illness, that is often a good time to begin home hospice care, says Patricia Wood, administrator of Assisted Home Hospice in North Hills and Ventura. Doctors should suggest hospice care planning before a patient is discharged from the hospital, she says.

“Physicians are involving us more in helping them with this transition,” says Wood. “The sooner we get the patient, the more we can offer the patient and family.”

Hospice teams can include nurses who provide symptom management, home health aides who carry out such tasks as bathing and helping move the patient, chaplains, social workers and volunteers in the community who will do everything from read to the patient to run errands for the family.

“The hospice care plan is tailored to that dying person’s needs and is also tailored to the needs of the family,” Davie says.

Family members also need to prepare for the death, both emotionally and intellectually, experts say. Emotional reactions sometimes disrupt the dying-at-home plan, particularly if some family members cannot accept that their loved one is dying.

“Family dynamics can get in the way,” particularly if the terminally ill person is younger, Meyer says. “The family wants them to live. We have to work hard with everyone in the family to accept that the loved one is dying.”

Family members can also become alarmed when the loved one is near death. Few people have actually experienced death, says Meyer.

“People need to know what to expect when someone is near death,” she says. “People stop eating and drinking. That is a common sign that the [body’s] systems are shutting down, and it may signal a more peaceful passing. But feeding a person is so tied in to caring for them that family members can get panicky.”

When the terminally ill person loses consciousness, stops eating or begins breathing abnormally, family members will sometimes panic and call 911--a move that is likely to thwart the dying-at-home plan.

“The person is in distress and the caregiver doesn’t know how to handle it and calls 911. They are looking for help but don’t realize they are unleashing this response in which the person may be resuscitated,” Meyer says.

Learning, in advance, how the patient may look and act at the time of death often helps the family accept what is happening and turn their attention to fulfilling the last wish of their loved one, says Wood.

“The comfort of dying at home with their loved ones around them is what people want.”

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For comprehensive information about hospice care and dying at home, contact:

* National Hospice and Palliative Care Organization, which offers numerous resources and information, including the pamphlet “Hospice Care: A Consumer’s Guide to Selecting a Hospice Program.” (800) 658-8898 or https://www.nhpco.org.

* Partnership for Caring, which offers broad information including instructions on ordering advanced directives. (800) 989-9455 or https://www.partnershipforcaring.org.